About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Monday, October 29, 2012

Well hi everybody! How are you? I sure hope better than I am, because I'm not @ my best right now. I had been doing sooo well for a couple of weeks! I was so happy, had gotten rid of the pseudomonous infection, feeling good, work was great ... so I was feeling ok about Mark going out of town for a few days to enjoy the celebration of his parents Doris and George's 60th Anniversary party! I would have loved to have gone, but there is just no way in the physical condition I'm in right now. Very high maintenance and I would have hated to have a bleeding incident in the middle of it all. Besides, it would have really tired me out too! This way, Mark could enjoy himself w/out having to worry about me. Can I just add that I really like the dress my mother-in-law Doris is wearing in the photo! She has excellent taste, her make-up and hair always immaculate - very stylish! Of course I can see how Mark will keep getting more handsome with age, since he looks so much like his dad George!
Mark was due home Monday night of last week, and I woke up @ 6:00 a.m. that morning feeling wetness on my chest. Sure enough, blood! I got up quickly to go to the bathroom and spit out several large blood clots. GROSS! Picked Mark up @ the airport that evening - glad he was able to get home, as his take off flight was delayed a couple of hours due to thunderstorms in the area! Since I don't cook, I had been dying for Mark to get home so I could have some delicious meals again - wouldn't you know it though - soon as we were about to have dinner Tues. night I had a bleed. Called out to Mark to come help, so his dinner had to wait. Of course there was no way I could eat either! Got it stopped finally after packing my mouth with gauze for a while and both of us fell asleep in front of the tv. Woke up about 1:45 a.m. and told Mark I was going to remove the packing in my mouth. It was ok - but of course I had to pull @ the blood clots (gag!) toward the back of the left side of my mouth and the blood just started shooting out again! It was lasting a while and I was going through lots of gauze and running out, so I knew I'd better get to the emergency room! By this time it's almost 3:00 a.m. Luckily we live a few blocks from the hospital - so I grabbed a plastic bucket, some paper towels and headed out! Mark waited w/me in ER a couple of hours then decided to go home and rest. It wasn't until about 7:30 a.m. that I was finally admitted and put in a room, and my sister Celia showed up right then and stayed w/me most of the day! Mom came by as well - and Mark brought me a few things I needed later. I needed 3 units of blood to get my level up, so I stayed overnight. I always miss my kiddos so much and Mark had just gotten home too! Darn it!
Course I was on a liquid diet, then soft diet. I'm still starving from Mark being out of town and then this happens! Course I'm afraid to eat and cause any more bleeding! My "meals" were juice and cream of wheat. Was released the next day - Mom picked me up and took me to get a decent meal @ Town and Country restaurant. Didn't eat much and she drove me home, knowing Mark would be home in about an hour from work! I was so happy to see my kiddos Hanz and Bella!
Went to work the next day - can't just stay home alone in case I had another bleed, and @ least going to work keeps my mind occupied and am surrounded by people than can help if I have any problems!
Took the kids to Petco and Petsmart Saturday, but that tired me out, so we came home after that. I had wanted to take them to a local Halloween event for pets, but there was just no way I could be out any more.

I feel so lost - I don't even know who I am sometimes. I can't just live in fear of another bleed, but how can I not after the terrible experience I just had?! It always takes a few days after having a bleed to feel I can relax a bit. So far, I haven't gotten there yet. I've been experiencing anxiety, hard time sleeping and afraid to eat anything but very soft food! I often wonder how much more I can take of this! If it weren't for the phenomenal group of people that surround me, I could not make it! My husband is incredible, I have the 2 cutest dogs in the world that love me, my family is awesome and always there for me and I have the best friends ever that pray for me and accept me as I am! My co-workers are always looking out for my best interest, telling me to take it easy, opening doors, offering a chair for me to sit and get comfortable ... I feel very blessed in that regard! I can't deny though that when I have a bleed, it totally messes with my head and I feel like this nightmare will never end! The only thing keeping me sane, is knowing that 2 fellow avm-ers (I know I've mentioned this before) have completed their procedures. I just want to be a woman in love, enjoying her husband and enjoying Mark-a-ritas and eating anything I want! For the most part, as long as I'm not bleeding or in pain - I can deal with my avm issues - it's having a bleed that throws me off! Mom wants me to keep going to church, but in order to "function" I need to take a pain killer and a steroid to get going. Well, the pain killer makes me drowsy, so last Sunday, Mark had to nudge me like 4 times during Mass because I started snoring!

I got a nice surprise from one of my "besties" like Amy Farrah Fowler says on Big Bang Theory! My bud Felice that lives in Dallas sent me a book in the mail (More letters from Pemberly) that I can take w/me to read in CO! Plus, she even included a gift card for Petsmart for our kiddos Hanz and Bella! WOW! I have such sweet friends that always think of me and keep me in their prayers and surprise me with things to get my mind off this horrible avm!

I'd better get packing - our flight leaves in 8 hours, which means I have to leave the house @ 4 a.m. and have Mark take me where Celia will pick me up and we'll head out to the airport so we can get there by 5:00 a.m!

I'll try and put in some photos later! Thanks always for all your love and support!!!!

P.S. Thought you might like to see a few photos from my in-laws Doris and George Schuman's 60th wedding anniversary! Thought Mark looked very handsome in this photo too! Then of course the photo featuring the family!

Saturday, October 6, 2012

Hi Everyone! We're home again! Sorry it's taken me a bit to write, but I needed to get my bearings after the trip, dealt w/a little bleeding and wanted to spend time w/Hanzarella before I sit a while @ the computer! Mark and I had a pretty uneventful trip - started with Mom showing up an hour early to take us to the airport!
Luckily the flight from Corpus to Houston is short, because the old guy in front of me leaned his seat back - we barely have room as it is! Guess he was all comfy cozy, so he ordered a beer! It's barely 10 am sir!
There were two lovely ladies to my right named Diane and Ruth on the stretch between Houston/CO! They are sisters and their husbands were horseback riding on a dude ranch in CO! I had to say, "like in City Slickers"? I believe Diane said something about thier husbands were sending a limo for them to the hotel to take them out to the ranch - cool! We "talked dog" since Ruth's daughter has a couple Jack Russells! They asked about my Nook and they really helped make my flight more enjoyable. Usually that last hour on the plane has me figety with anxiety and claustrophobia!

Soon as we landed - headed to my ENT appt. with Dr. Andre Reed - head of Voice and Swallow in CO. I had not see him in years - but every third visit I see an ENT to check my airways before an embolization is done by Dr. Yakes! It was great seeing him - he's lost some weight!

Went to dinner @ Mimi's Cafe in the Lone Tree area and then to a petstore to enjoy some pups! Finally headed to Swedish where Mark dropped me off in the lobby w/all our luggage as he parked the car. Right away I see one of my favorite nurses wheeling out a patient. Rick Smith is the best post op nurse I've ever had - he thought I was on my way out, but I assured him we had just arrived! Checked in @ the 7th floor nurses station to be greeted by lots of friendly faces, smiles and hugs! Jill (my Twilight buddy) was there, Dave Labadie (original dream team from first embolization) and Alex, one of the new techs (a/k/a Taylor Lautner)! During my stay I enjoyed being taken care of by more of my faves, Judi, Laura and Burgess! Didn't get to sleep until 4:30 a.m., but I would be the last one going in to OR the next day, so no problem!
Lately, since I have been checking in the day before the embolization, I was under the impression that I no longer went to post op. Wrong! Apparently, I just wasn't waking up until I was in my room - except for this time. I woke up and guess I was feeling like I wasn't getting enough oxygen, so my instinct was to sit up from the flat position I was laying in so I could breathe better! Well, more often than not, Dr. Yakes does an arteriogram and that means a groin stick and I have to lay flat several hours afterwards otherwise I'll bleed all over the place from that stick! Course as I'm coming out of the anesthesia and all, so I'm just going with my instinct - but I remember the anesthesiologist Wendy and another nurse trying to tackle me back down to a flat position! I started praying Hail Mary's to calm myself down and knew I needed to relax as hard as that was! Aaak!

In case you didn't recognize Mark a few photos up, that's him still in the operarating room with me right before the embolization! Dr. Yakes unded up using 31 coils and 10 cc's of alcohol to stabalize or neutralize the arteries! Dr. Yakes P.A., Kelly tells us the coils are in deep - I had coils a few years ago that ended up being exposed as the wound was healing and had some bad bleeding issues. I keep holding on to the thought that all of this will be over one day - this is where a lot of your prayer comes in - please give me the strength to endure what is in store for me/us! My hospital stay worked out well - since I didn't have much of an appetite, I'd have Mark order what he wanted for meals, as long as I had some cream of wheat! Mark takes such great care of me - well, everyone does really! I tell people that I am sooo blessed to be surrounded by so many angels that help throughout my day. Everyone @ work is awesome and always helping in anyway possible! Always asking if they can help w/any task I'm doing or opening doors for me as I come through with what Mark calls my "what if" cart! I drag that hobby cart w/me to work and back every day and get asked alot what's in it. In case you don't already know .... it is soooo uncomfortable to "be me" that I bring whatever I can with me to make my day more enjoyable! From my meds, to snacks, my Nook, an extra cd. I have a couple new job duties that are working well. Since some of us @ work are having some free down time, I now sort the mail in a very nice mailroom! I get a good cd, something to drink and am able to go at my own pace and get my work done! Sorting through faxes, UA results and placing them in the right boxes for officers or departments! I also sort through offense reports in a file cabinet that an officer might need to complete a report and get that put in their mailbox. By the time that's done, I usually have a pile of files waiting for me on my desk that need to be taken care of!

Back to Swedish, after the embolization, it's pretty much just "hurry up and wait" until I am released. After showering I walked down to the gift shop and saw a cute stuffed toy that reminded me of Hanz I just had to have! My last night @ Swedish reminded me of when I got my trache - @ that time I was doing the same thing, talking and gesturing in my sleep! I am given steroids for the swelling after an embolization and that makes me warm. The little pockets under my tongue were swollen, so I couldn't even drink from a straw! I turned toward the right of my bed, since @ home I have a little fan on my nightstand - of course it wasn't there, because I was @ Swedish! I remember looking in the opposite direction hoping to see Mark since he would be to my left in our home bedroom, but he wasn't there. All this time you have to realize I'm medicated and more alseep than awake! I even patted the mattress a few times and called out to Hanz to jump up and be with me! I sure miss our kiddos while we are in CO!

We left Swedish Saturday morning by 8:00 a.m., returned the car rental and headed to the airport! Got home and Mom and Vicente were already there to pick us up! I stepped outside w/the Morins as Mark waited for our luggage and look what I saw! It was too good a photo op to pass up! I thought these guys were dressed up to pick up a kid, but no - it was Captain America that greeted his girlfriend with a kiss!
So happy to get home to our babies! Our neighbor Shauna takes really great care of them while we are in CO! Rested all day Sunday and back to work on Monday! Mark had called that he would be working late, so I was home alone when I had a bleed that afternoon - darn! Ugh! That was bound to happen.
Got some very discouraging news from fellow AVM-er Shalon on Facebook! I don't know the detaiils right now, but I do know that she has already been given the "we are done" twice, and had to have a little more embolization after a 6 month MRI follow up - but she just expereinced a massive bleed! Oh no! I was hoping the closer we got toward the end of the treatments, the lesser chance of bleeding! Apparently it's just not going to completely stop bleeding untill the avm is entirely shut down! :( Well, on the bright side - my pseudomonous infection IS done and I'll be back in CO with Celia @ the end of the month!
Thank you everyone for keeping up with us! Enough drama! Talk to you soon!
Love,
Mark, Cyndi, Hanz and Bella!

I always hear people saying they can't leave a comment on my blog: you can always write to me @ schumancynthia@gmail.com or dulce@grandecom.net I would love hearing from anyone that has any questions about anything I'm going through - thanks! Have a blessed day!